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I haven’t felt good in a decade. But I’ve also had five babies and two miscarriages, totaling seven pregnancies, in that same decade. Who would, right?
In 2016, after my second child was born, I had trouble eating many types of foods and had stomachaches all the time. I went to the doctor, who brushed it off a few times and recommended testing that would interrupt nursing. As a new mom in the middle of establishing my milk supply, that sounded ridiculous, so I dealt with the pain.
In 2018, after my third child was born, in addition to the stomachaches, I had headaches. They weren’t really explainable, though doctors suggested weather changes, stress, and, of course, hormones — after all, postpartum moms have those pesky things spiking and crashing in abundance.
In 2021, after my fourth child was born, I was so dizzy and lightheaded that I couldn’t work some days. On others, it was just an average amount of dizziness. I saw an endocrinologist, who said I have Hashimoto's — a thyroid condition. He suggested eating gluten-free, which I did. My numbers came down, but my symptoms remained.
Tour de Doctors???
By this point, I had four kids, a full-time job and was navigating early pandemic life. Each month, I’d chip away at finding solutions to my various issues. I saw a neurologist for my headaches. She recommended massage and de-stressing. She also ordered a head CT, which was clear. I saw an endocrinologist who said my hormones were fine for a nursing mom, and maybe it was the beginning of menopause or lingering postpartum symptoms. I saw my PCP, who was puzzled but supportive. I saw a therapist, then another therapist, then a psychiatrist, because, of course, maybe it was stress. I saw a functional doctor, who told me to avoid that gallbladder surgery at all costs, and put me on a whole host of supplements.
I saw a GI doctor who analyzed my gut health. It was a new low, actually pooping in a container to see if a secret amoeba was living in my digestive tract, but I was desperate. I eliminated dairy, soy, corn and other additives along with the already eliminated gluten. An upper GI scope and a colonoscopy were all clear.
Finally, after my fifth baby, my stomachaches worsened enough to head to a gallbladder specialist. There was a large cyst, 11 mm, and a “rotten” lining that wouldn’t improve. The doctor said to get it out in the next year or two, but that it wasn’t the cause of all those other problems. “Get your health in order, then we’ll deal with this,” he said. I went back to the drawing board, taking migraine medicine to get through the day, and taking breaks for dizziness episodes.
I had gone everywhere, but I wasn’t getting anywhere.
When Your Body Tells You the Truth
In December, I had a few weeks of diarrhea and serious stomachaches whenever I hadn’t eaten. Just after this past New Year’s, I doubled over in my closet. I texted my husband (who was home) from the floor, lying under my sweaters — “I’m dying.” My body had finally had enough, and it was time for it to share the secret, disguising itself as perimenopause, postpartum symptoms, mental health issues, food sensitivities and hormonal imbalances.
I checked in at the ER and told the physician my gallbladder was finally exploding, and I needed it out. Luckily, he said, “Not so fast,” and did an elaborate whole-body workup, including a CT that showed appendicitis. But I didn’t have appendix pain, I shared. He said it didn’t matter, and it had to come out. I talked the surgeon into taking out both my gallbladder and appendix at once, because with five kids, I didn’t have time to come back later.
I Woke Up Cured
I woke up from that surgery without symptoms. Everyone was perplexed — how could a simple case of appendicitis or a gallstone cause such drama? A week later, I finally found the answer I’d sought for a decade.
I had cancer.
There was a tumor the size of an Oreo in my appendix, made up of neuroendocrine cancer. As the doctor’s words blurred together on the call, my mind flashed to the hours — and days — spent at appointments I’d sat through, the scans, medicines, tests, questions and doubtful looks from providers who thought I was just stressed or “had a lot on my plate.” The surgeon took a picture of the elusive tumor, and I felt like I’d finally found a needle in a haystack. That’s exactly what they called it, sharing that the type of tumor I had rarely had any symptoms at all, so most people are already in stage 4 with metastatic cancer when they find out.
I had to have part of my colon removed where the cancer had spread to the lymph nodes. They explained that it had likely been growing for around a decade inside the appendix, and just recently perforated the lining, spreading into the colon nearby. The colon lymph nodes supply blood to the liver, which became the next area of concern.
My cancer is stage 3, but the doctor told me there was “no evidence of disease” after the two surgeries. If it stays that way — a 65 percent chance — in 10 years, I’ll be in remission. If it comes back — the other 35 percent chance — it will be stage 4 and will have spread somewhere else.
When They Say It’s Just Hormones
The type of tumor I have is literally hormonal. It releases hormones. Since it’s such a rare type, it’s the last thing doctors suspected. But my specific type of cancer is far from the only one — eight in 10 breast cancers are hormone-related as well.
“Hormone receptors are found in specific target cells throughout the body,” says Dr. Bimisa Augustin, director of clinicians at Thrivelab, based in San Clemente, Calif. “Estrogen is mostly found in the female reproductive organs; testosterone is found in the brain and pituitary gland; progesterone receptors are found in the reproductive system, smooth muscle and cardiac system; and thyroid receptors are found in almost every cell in the body.”
Dr. Christi Pramudji Dawe, medical director at LifeSculpt in Houston, says physicians blame menopause because the symptoms overlap with other conditions like thyroid dysfunction, adrenal fatigue and autoimmune diseases, including fatigue, weight gain, brain fog, joint pain and mood swings. “The symptoms are vague and nonspecific.”
She points to age-related bias, a lack of comprehensive testing and fluctuating hormones that most physicians only have a “cursory” understanding of. She recommends tracking your symptoms, requesting comprehensive testing and looking at lifestyle and nutrition, including sleep. “It often takes time and testing to really get to the heart of what is actually going on.”
What I Learned
Now, I look back on my journey with a mix of gratitude, anger and fear. I’m grateful for the doctors who believed me, who pushed me to find the true root cause, and the ER doctor who scanned everything, finally. I’m angry for the years of suffering, questioning and normalizing living with debilitating conditions that impacted my ability to work, parent and enjoy life.
Finally, I’m scared for other women who are told their symptoms are due to hormonal issues that account for collective decades of their lives, from puberty to perinatal or perimenopause. Those three Ps give everyone permission to write women off, and permission to ourselves to worry that maybe we’re just a little too sensitive, too anxious, or worst of all, too hormonal.
Do you feel as though your doctor really listens to you? Let us know in the comments below.
Andrea D'Aquino
Follow Article Topics: Health
